Lack of support for families among barriers to experiencing a good death, report finds

A lack of support for families and carers are among several barriers to experiencing a good death, according to a new report from the Irish Hospice Foundation (IHF).

A good death was described by participants in the research as comfortable, calm, and free from pain and suffering.

It was also one which honoured the end-of-life wishes of the patient, allowing them to die with dignity in the place of their choosing, with those they wanted present.

The IHF also quantified a good death in the home as one where families and carers were empowered to provide suitable care to patients; where medical professionals could support informal care; and where the medical and social needs of the patient were met promptly and responsively.

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The report notes that while “many people do die well at home”, there are also “systemic gaps in the provision of end-of-life care in Ireland [that] can lead to consistent barriers and difficulties for both the individual and those who care for them at home and also for the professionals providing care”.

Statistics show that 30,000 to 35,000 people die in Ireland each year and the IHF pointed to a previous piece of research which said that while 74 per cent of people in Ireland have a preference of dying in their own home, only 23 per cent of people in Ireland have home deaths.

Among the barriers to a good death identified by the IHF are insufficient support for families and carers; inadequate access to care; poor co-ordination of care; insufficient resources to provide care; unsuitable standard of care for individuals or communities; and lack of other social supports.

These issues were further exacerbated in communities which already experience inequitable access to healthcare in Ireland, highlighting the lack of suitability of current services, the report said.

“While it is not possible for everyone to die at home, Irish Hospice Foundation believes that more can be done to enable greater choice about where people are cared for as death approaches, to allow them to receive the highest quality of care and indicate their preference to die at home if medically and practically possible,” said Paula O’Reilly, chief executive of the IHF.

“This report identifies the gaps in services that need to be filled if everyone in Ireland is to have the opportunity to be supported to die in the right place, at the right time, with the right care.”

Participants highlighted the fundamental need for a strong health system in order to provide end-of-life care at home, including sufficiently resourced services and adequate staffing. They also shared opportunities for greater holistic care through integration of health, social and community services.

Among the recommendations in the report is the development of a new information and support line and the creation of an easily accessible map with information resources and current services for supporting end-of-life care.

It also wants to see a review of existing resources and training with a view to making these accessible to the community and the identification of best practice community-based end-of-life models of care, which are socially and culturally appropriate to address the specific barriers to care faced by underserved groups to support dying well within their communities.

It also says the IHF needs to “strengthen our advocacy for primary palliative care supports that help people remain in their community and die at home if this is their wish and is possible”.